I am sitting and thinking about where to start. There are a handful of ideas I want to explore, some of which feel separate, some of which feel encased inside others. I am sitting and thinking if it is best to explore them one by one, or to mix them up. This attempt to write my way into my writing, and the fear of writing, circles around an idea and is emblematic of the thing I want to write about: the limitations of language in communicating inner experiences. The words I use hang around in the air, and the more I say the more crowded the air becomes. Can I find words that could break through the noise?

I received a diagnosis of Tourette’s Syndrome in my early twenties, despite displaying symptoms my whole life. These symptoms are most basically described as involuntary movements and vocalisations, called tics, which have a neurological origin still fairly mysterious. Tics can be anything: jerking, stretching, nodding, scratching, lifting, hitting, tensing, flexing, whistling, grunting, coughing, speaking, yelping, sniffing, singing, reciting, and so on. Stereotypical “profane” tics occur only in a small percentage of diagnoses. I want to explore the challenges I have when communicating my experience of Tourette to others: my experience of what Tourette is and feels like, the lack of language for describing this experience, and the potential effect of creating new language for myself.

While tics are the visible symptom of Tourette, within the body there is often experienced another known as the premonitory urge. It is here that my language breaks down. I have spoken to doctors, psychologists, therapists, relatives, friends, and strangers about my experience with Tourette, and it is always here that things get complicated. I feel it happening now as I write, the obstruction between myself and understanding. I recall questions like “do you know you are ticcing?”, “what does a tic feel like?”, “what makes you tic?”. For me, these questions all orbit the black hole of the premonitory urge. The urge absorbs the question, leaving behind no understanding or clarity, just a brief firework of pretty words that quickly dissipates. It is a room I cannot see into, that I cannot illuminate with the words I have. A tic for me is just an action: so nod your head hard or whistle a long clear note, and you will get an idea of the mechanics. But the purpose and effect of these actions lies in the urge. It exists as a command, a beckoning towards action. It is neither tangible nor ethereal, it is a hum, a tension, an aura… Now you see my language breaking down, becoming ambiguous and poetic.

In the past I have conflated the urge-tic relationship, combining them into one cycle with analogies like: “hold your breath as long as you can, and see how eventually you have no control over how you gasp for air” or “resist blinking, and see how eventually you are forced to blink rapidly” or “scratch an itch”. I think these analogies are misleading, or misfocused, because they are more concerned with the anticipation of the tic action than the sensory qualities of the urge. So what are premonitory urges, and where are they?

Most people with Tourette’s Syndrome experience urges, with each of their tics preceded by a unique urge, sensed somewhere in the muscles required to perform that tic. For me, the premonitory urge is not a physical sensation like a stretch or pain or frisson. Since I was small I have tried to explain it as an aura, a kind of haze enveloping a body part. The urge is a wordless command to perform an action, and once performed exactly as requested, the urge temporarily disappears. I display an extraordinary variety of tics throughout my body, but I am not always aware of urges associated with them. It is possible that premonitory urges precede all my tics, but maybe due to low intensity and my learned behavioural response to enact tics immediately, I do not detect them consciously. Some urges can be resisted. If I do this, the urge grows stronger until it is too uncomfortable to resist, and I tic with greater force than the urge originally demanded. It becomes clear as I write that it is easier to define what premonitory urges are not: palpable, uniform, or anatomically defined, than what they are.

The eponym “Tourette” comes from Georges Gilles de la Tourette, a 19th century French neurologist who, among many things including hysteria, hypnotism, suspension therapy for tabes dorsalis (an advanced stage of neurosyphilis), and art criticism, researched tic disorders. Tourette was a precocious and prolific doctor whose later life was beset with strange tragedies. He was shot in the neck by a former patient, who claimed one of his staff had unconsensually hypnotised her. Following this, he suffered severe depressive episodes, seizures, and psychotic fugues, to the extent that a colleague persuaded him to travel to Switzerland to “treat a celebrity patient”. Upon arrival he was committed to a psychiatric hospital, where he was diagnosed with advanced neurosyphilis: tabes dorsalis. It is possible he would have been administered treatments he had created.

Tourette died at 46 in a Swiss hospital in 1904. His legacy faltered, and he faded from public memory. Sigmund Freud rose to prominence and much of Tourette’s neurological work was assimilated into psychiatry, where, like many conditions, it was lumped into a morass of psychological disorders said to originate from repression and trauma. As a result, Tourette’s Syndrome today is still mysterious, and ambiguously (though justifiably) connected with other neurodivergences such as ASD, OCD, and ADHD. Tourette is connected to these both via the presentation of similar symptoms and the likelihood of comorbidity. It comes as no surprise then, that the language available to describe those symptoms is imprecise, and that as a result, the conditions remain widely misunderstood.

Georges Gilles de la Tourette’s work was rediscovered in the second half of the 20th century, and much progress has been made since to define Tourette as a neurological disorder, and to research its causes and possible treatments. Recent research has looked at the electrical signals made by the brain’s neurons, which correspond to intentional movements made by the body. It is hypothesised that in the brain without Tourette, the constant noise of multiple neurosignals is controlled and inhibited by other cells, allowing one signal to dominate and send its message to muscles, meaning a person is in full control of their movement. In the brain with Tourette, however, these signals are not inhibited, and so remain chaotic, causing muscles to receive frequent mixed messages to perform unwilled actions, resulting in tics.

I find it funny that I now come to understand Tourette as electrical. For years before I was diagnosed, I would say of my tics that I had “too much electricity”. I would describe my “noisy” mind, where stress would defocus me and exacerbate my tics, and I would enjoy the silence that resulted when I attended to specific, focused tasks, where I would rarely tic. My symptoms are exacerbated by the external world, particularly loud sounds, high intensity society, attention from others, and drastic changes in environment. I call it all “noise”, and my attention to it only intensifies its volume, resulting in a feedback loop where I tic because I am stressed, and I am stressed because I tic. The premonitory urges then, I see as symbolic of all this noise. They originate because of electrical “noise” in the brain, which is exacerbated by environmental noise, and they display as a noise of movements and literal, vocal noise. All this in turn clouds my own thinking, debilitating my thought process to the point where all thought is noise, a clamour of panic and stress and frustration at losing control over my body. It is only when I can remove myself to a literally quiet area, and focus on one thought amidst the pollution, that I can begin to regain control during a dynamic period of tics, when I can aim to return to silence, and in silence be returned to myself.

Sound is not directly felt, and we spiral when we ask where it happens. Is it in the event of a hand clap? The passage of energy through air particles? The stimulation of the ear drum? The processing of that stimulation by the nervous system? Sound is an abstraction that we cannot directly apprehend or help experiencing. But we have more control over our perception of sound than we often give ourselves credit for. We can sit in a busy room and marvel at how we can isolate certain voices, tuning into one conversation while the rest of the babble falls away, then retuning to a different one. This babble of clamorous voices with no clear message is what I’m referring to as “noise”, and as this noise is familiar to us, it could be helpful in expressing the sensation of the premonitory urge, without going too far down the garden path of my earlier breathing and blinking analogies.

Noise might be more useful as an analogy, because premonitory urges exist as literal manifestations of the brain’s system noise, and they reflect the nature of noise in their mess of messages, and in their mysterious, holistic structure. I can’t say exactly where I sense the urge in my body, but I know it generally, like locating a hum in a busy room, crowded by other sounds and disoriented as it echoes off the walls. The babble contains its own hums; it is made of them as well as of all the things I want to focus on instead. The claustrophobia of the crowded room, and our ability to isolate sounds within that din, is akin to the premonitory urge. Both within and without, immanent and localised, physical and ethereal, focused and blurred. I can try to detach myself, to watch (or listen to) the effects on my body as I try to find calm, but the noise continues regardless, until I can physically remove myself from that environment and hear myself. To remove is to tic, and to tic is to temporarily, very temporarily, silence the noise.

While this essay focuses on my experience with Tourette’s Syndrome, I believe I am not alone in wanting to find a personal language for communicating my internal experience. My experience with Tourette will overlap with others living with it, but not perfectly. Likewise, for other neurodivergent people, or anyone living with a physical or psychological condition, living through a unique and turbulent series of life events, or for anyone who is attempting to communicate an experience not easily represented by the available language, there is no new vocabulary that can be offered which will fit us all, this would only return us back to where we started.

It is my suggestion that we can arrive at more useful language through closer observation of our situation, not by extracting ourselves from it, but by viewing our unique situations from within them. From this perspective, we can attempt to identify the ways we consciously and unconsciously influence our selves, and so the world, and so our selves again. In my own life with Tourette, I have proceeded from a mess of confusion and received, objective science in my early diagnosis to a breaking down and observation of my lived experience, to a unification of the nature of my Tourette with my own tendencies as a person. In short, I try to listen more to the way that my own Tourette’s Syndrome engages with my personality. This ever ongoing process of life listening is, I think, helping me develop language that better communicates my experience of the condition, primarily the premonitory urge. It has not been my intention to fully give this communication here, rather, I have tried to demonstrate a shorthand of my way of thinking towards developing language to describe my experiences, so that others may be encouraged to do the same.